Suffering

Key Messages

  • Suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.
  • The social components of a person’s life need to be supported to provide a holistic palliative approach to care.
  • Dying brings decline in health, withdrawal from social networks, loss of normal roles, and the confrontation of the end of one’s existence, which can lead to existential distress.
  • There is some controversy about the use of sedation to manage distress that is not physical in nature. [1]
  • There is limited evidence but there is agreement among clinicians that sedating patients for existential distress is not appropriate. [2]
  • There is an emphasis on seeking to preserve the patient’s sense of dignity. How patients perceive themselves to be seen is a powerful mediator of their dignity. [3]
  • When the preservation of dignity becomes the clear goal of palliation, care options expand well beyond the symptom management paradigm, and encompass the physical, psychological, social, spiritual and existential aspects of the patient’s terminal experience. [4,5]

  

 

 

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Evidence Summary

Definition and Prevalence

Suffering has been described as a psychological or spiritual state that can diminish an individual’s capacity to find solace or peace in their present situation. [3] According to Cassell 'suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner.' He observed that modern medicine in its practice can unwittingly contribute at times to patient suffering. [6] He later emphasised that to appreciate the suffering of others requires a full understanding of the personal narrative of the individual. [6] Suffering can engender a 'crisis of meaning' [7] or a spiritual re-evaluation of life’s ultimate importance. Although suffering is widely experienced by palliative care patients, it is often concealed by the individual and not recognised by others.

  • Suffering may occur in the palliative context at any time
  • Suffering is not confined to physical symptoms
  • Suffering is held as a state of severe distress that is subjective and unique to the individual
  • People suffer not only from an illness but also from its treatments
  • One can never anticipate the source of another person’s suffering
  • Healthcare professionals sometimes withdraw from those who suffer because they are unsure how to proceed, or they fear making matters worse
  • Clinicians need to sensitively explore with each patient, in an atmosphere of trust, perceived aspects of their suffering. [6]

Assessment

Important contributing factors include:

  • Sense of dread of the unknown
  • Loss of equilibrium and being overwhelmed by life’s circumstances
  • Family distress or dysfunction
  • Spiritual or existential concerns
  • Co-morbid depression and / or severe anxiety.

Screening of distress is still under development and recommendation of which tool to use depends on context of use. [8,9]

Treatment

Two major considerations relevant to suffering in the palliative care context are existential distress and the impact of dignity conserving care. Evidence relating to these and their treatment is considered separately in the accompanying pages.

Practice Implications

  • Palliative care practitioners are increasingly able to respond to the pain and symptom distress experienced by those at the end of life. The concept of providing comfort as opposed to making a person comfortable has only recently begun to be re-examined. [6]
  • What an individual values will determine what priorities they set and can help health care professionals understand care priorities in alleviating suffering and delivering dignified care. [10]
  • When an individual does 'not feeling treated with respect or understanding' and feels a ‘burden to others' they are more likely to have dignity-related concerns. [7]
  • There is some controversy about the use of sedation to manage distress that is not physical in nature. [1]

Evidence Gap

  • The strength of the patient doctor relationship has been emphasised in writings on the nature of suffering. [3,6]
  • Research into the nature of suffering is gaining momentum. [7] It continues to be conceptually explored. [11,12] The research however is still not population specific so that our understanding of the nature of suffering at particular phases of the life cycle is still poor.
  • There is a need to continue to explore the role of sedation and existential, non-physical suffering. [1]
  • Considerations of dignity have been invoked as justification for:
    • Euthanasia and assisted suicide. [13]
    • Hydration and nutrition
    • Terminal sedation
    • Basic symptom management.
  • Research into dignity issues for specific populations such as people with dementia or those from a different cultural background is beginning. [14-16]
  • Privacy and dignity issues for all patients within the health care system are also being discussed. [17]
  • A number of studies on dignity focus on family members and further research is required to understand the interaction between the family and the individual. [18]
  • The concepts of existential distress and existential loneliness need clarity and agreed definition. [1,19]
  • How health care professionals can best support existential well being is not known. [20]
  • The effects of existential distress on physical symptoms are not known. [20]
  • Screening of distress is still under development. [8,9]
  • Lack of empirical attention to ideas around existential loneliness and psychosocial and spiritual interventions has been suggested as a contributing factor to the unfounded use of deep continuous sedation and even euthanasia. [21]
  1. Rodrigues P, Crokaert J, Gastmans C. Palliative Sedation for Existential Suffering: A Systematic Review of Argument-Based Ethics Literature. J Pain Symptom Manage. 2018 Jun;55(6):1577-1590. doi: 10.1016/j.jpainsymman.2018.01.013. Epub 2018 Jan 31.
  2. Lam M, Lam HR, Agarwal A, Chow R, Chow S, Chow E, et al.Clinicians' views on palliative sedation for existential suffering: A systematic review and thematic synthesis of qualitative studies. J Pain Manage. 2017;10(1):31-40.
  3. Williams BR. Dying young, dying poor: a sociological examination of existential suffering among low-socioeconomic status patients. J Palliat Med. 2004 Feb;7(1):27-37.
  4. Prizer LP, Zimmerman S. Progressive Support for Activities of Daily Living for Persons Living With Dementia. Gerontologist. 2018 Jan 18;58(suppl_1):S74-S87. doi: 10.1093/geront/gnx103.
  5. Rodriguez A, Smith J, McDermid K. Dignity therapy interventions for young people in palliative care: a rapid structured evidence review. Int J Palliat Nurs. 2018 Jul 2;24(7):339-349. doi: 10.12968/ijpn.2018.24.7.339.
  6. Cassell EJ. The nature of suffering and the goals of medicine. Oxford: Oxford University Press; 1991.
  7. Lethborg C, Aranda S, Cox S, Kissane D. To what extent does meaning mediate adaptation to cancer? The relationship between physical suffering, meaning in life, and connection to others in adjustment to cancer. Palliat Support Care. 2007 Dec;5(4):377-88.
  8. Vodermaier A, Linden W, Siu C. Screening for emotional distress in cancer patients: a systematic review of assessment instruments. J Natl Cancer Inst. 2009 Nov 4;101(21):1464-88. Epub 2009 Oct 13.
  9. Thekkumpurath P, Venkateswaran C, Kumar M, Bennett MI. Screening for psychological distress in palliative care: a systematic review. J Pain Symptom Manage. 2008 Nov;36(5):520-8.
  10. Ebenau A, van Gurp J, Hasselaar J. Life values of elderly people suffering from incurable cancer: A literature review. Patient Educ Couns. 2017 Oct;100(10):1778-1786. doi: 10.1016/j.pec.2017.05.027. Epub 2017 May 24.
  11. Chochinov HM. Dying, dignity, and new horizons in palliative end-of-life care. CA Cancer J Clin. 2006 Mar-Apr;56(2):84-103; quiz 104-5.
  12. Breitbart W. Upright and whole: an approach to suffering in the face of death. Palliat Support Care. 2007 Dec;5(4):347-9.
  13. Byk C. Death with dignity and euthanasia: comparative European approaches. J Int Bioethique. 2007 Sep;18(3):85-102, 118.
  14. Holmerová I, Jurasková B, Kalvach Z, Rohanová E, Rokosová M. Dignity and palliative care in dementia. J Nutr Health Aging. 2007 Nov-Dec;11(6):489-94.
  15. Hall S, Chochinov H, Harding R, Murray S, Richardson A, Higginson IJ. A Phase II randomised controlled trial assessing the feasibility, acceptability and potential effectiveness of dignity therapy for older people in care homes: study protocol. BMC Geriatr. 2009 Mar 24;9:9. doi: 10.1186/1471-2318-9-9.
  16. Coenen A, Doorenbos AZ, Wilson SA. Nursing interventions to promote dignified dying in four countries. Oncol Nurs Forum. 2007 Nov;34(6):1151-6.
  17. Whitehead J, Wheeler H. Patients' experiences of privacy and dignity. Part 1: a literature review. Br J Nurs. 2008 Mar 27-Apr 9;17(6):381-5.
  18. Scarton LJ, Boyken L, Lucero RJ, Fitchett G, Handzo G, Emanuel L, Wilkie DJ. Effects of Dignity Therapy on Family Members: A Systematic Review. J Hosp Palliat Nurs. 2018 Dec;20(6):542-547. doi: 10.1097/NJH.0000000000000469.
  19. LeMay K, Wilson KG. Treatment of existential distress in life threatening illness: a review of manualized interventions. Clin Psychol Rev. 2008 Mar;28(3):472-93. Epub 2007 Aug 7.
  20. Henoch I, Danielson E. Existential concerns among patients with cancer and interventions to meet them: an integrative literature review. Psychooncology. 2009 Mar;18(3):225-36.
  21. Ettema E, Derksen LD, van Leeuwen E. Existential loneliness and end-of-life care: a systematic review. Theor Med Bioeth. 2010 Apr;31(2):141-69.

Overview Articles

Last updated 21 October 2019